PREDICTIONS - WHAT TO TEST,, WHAT NOT

Thank Heaven my primary has a clue to this

http://www.medscape.com/viewarticle/880535?src=soc_tw_170528_mscpedt_news_mdscp_mdscp_lee

CANCER BREAKTHROUGH DRUG - and a clear look at exceptions

"In Bold Move, FDA Approves Cancer Drug For Any Advanced Tumor With Genetic Changes"  Forbes  Elaine Schattner 

I almost gave up on this article (which was on Twitter this week) because I'm not familiar with the disease types that may be helped.  

But the writing is so clear and important that I marched through the first two paragraphs.  And found the WHY of this important turning point:

"It suggests the agency may be ditching an archaic system for classifying cancers based on body parts—like breast or liver or colon cancer—and instead will focus on molecular aspects of malignancies, qualities that render tumors 

vulnerable, or not, to targeted drugs."

We're talking about Keytruda.  And we've arrived at the possible problems and considerations;:

"The FDA cites data compiled from five non-randomized studies that support this drug’s effectiveness in various tumor types."  Generally, I hesitate when I see the words non-randomized studies.

Then: $Cost.  Big.  And high toxicity. 


Then two things I would hope for if it were my tumor, my body: physician's judgment.

And appropriateness/accuracy: 
"Distinct ways of checking tumors for these abnormalities could yield variable results."

Yes, a tough road, tough decisions.  

And I remember something beautiful I retweeted this week: with apologies to the original writer, 
something about the patient being the only one who knows all that's really going on in his body.

I wish you health.

 

SOURCES, PLEASE, please COFFEE BREAK

Two new posts on Twitter just now on costs of screening later for BC and at what age.

I'm not quoting them.  There has been so much disagreement on when/vs/what age, vs something else that I want to know:  what specific study popped out these figures, and how recently.

And how often that study has been cited as a reliable one.

In short, I like to know Who Says So.

Meanwhile, I'm sticking with my oncologist who still favors a yearly mammo for people who have already had DCIS.  And that's regardless of who says now it's "not really cancer."

I wish you health.

Patient Experience = Yours - Coffee Break

I got this on Twitter, retweeted by someone I follow:

Advisory Board‏ @AdvisoryBd  May 15

We'll be talking about #PatientExperience for all of May. Tweet us your stories using #TreatThePerson!

hashtag #TreatThePerson

I Googled Advisory Board, got a pile of things.  If you're on Twitter or can get a minute on someone's, you might use the hashtag, tell it like it was.     

                          

SEE, DOCTOR? This is Where It Hurts

Once, I was referred to a doctor who just did not like me.  He did send me to Pth, but at the end of our awkward hour, he informed me that:

"You're not good at saying what's wrong with you."

I thought he was supposed to tell me what's wrong with me.  But I think I know what he meant; Describe some pain, something that will tell me where to start, something you want to do but can't.

When I was tutoring, I remembered a girl I knew in college who drew muscles and whatever on her own skin as a study skill.  I suggested at a tutor training that there might be a place for that when the tutor and the client didn't speak the same language,

 Now I found this article  thru Twitter. 

Show, don’t tell: how visuals improve healthcare visits

By Katie McCurdy and Chethan Sarabu, MD,    (BYLINED Katie McCurdy.)

The banner of the article was just very simple line drawing, like a smart kid could draw (of a doctor's office.  BINGO.  I wanted to draw too-tall waiting room chairs and how they cut off my circulation.  But the bylined author, Katie McCurdy is not about furniture, she's sharing how pictures can give a trainload of our information to the doctor - and in a picture of how one symptom, one day, one weather change may cross-affect other ills, other tests.

 McCurdy has drawn an elaborate time line chart; symptoms, felt or diagnosed, overlaid on each other day by day   I see this as valuable for so many reasons - each day shows a relationship of symptoms, so if there's an effect between two symptoms, it shows.   I hope you can find the article to see how this looks: with one major problem in pale color, the others can be line drawn on top of it.  Tests and other affecting factors can be written in the margin.

     If I could learn to do this with my colored pencils - 

 it might take the place of even an hour of talking to the doctor. 

 He could see for himself what aggravated a pain, affected a  test.

    

A help for people like me - a lumbar fusion that affects arthritis and circulation and more...   a dermatitis affects my eye infection; and do my sinuses also affect my eyes. 

Dr. Sarabu, the other author,  is a pediatrician.  He understands dealing with a kid's vocabulary, including scared vocabulary.  We might be surprised how kids can draw the hurt times and place -  just what  doctor needs to know.  

And Yes, adults have scared vocabulary days.  I sometimes do,  and did when that voice on the phone said "cancer."

He also mentions how visuals can help the doctor.  (So we don't feel funny bringing in these charts and pictures.)

 There is so much more covered here.  Including a reference to " a long history of surgeons adding paper drawings to the chart to better describe the details of the surgery they performed."

Even if we don't chart (I don't,) McCurdy shows us her very simple "paper doll views" that we can do.  One front view sketch can show where it hurt Monday, one for Friday. a different one for Wednesday.  Could show ailments like Arthritis that stab  Tuesday morning, then disappear for days.

She has a photo of how she arranged those paper doll  "day" sketches in order before the doctor even got into the office.    Did this work for Katie and the doctor?

"I felt that she heard me, 

and she ordered a bunch of tests

 based on the symptoms I was having."   

 There is even a worksheet you can copy to start your own "record."

   I see this as a way to "engage" our doctors and to show that we are and have been engaged.


(Medium) @Medium  https://medium.com/@katiemccurdy/show-dont-tell-how-visuals-improve-healthcare-visits-1b994f7fd90e

COFFEE BREAK - From Kaiser Health News

Have you seen/read this?

Widespread Hype Gives False Hope To Many Cancer Patients

By Liz Szabo April 27, 2017

For me, the interesting thing about this article is: 

 just reading and comparing what doctors say versus what medicine manufacturers say.

RIGHT NOW, Even if you hate science, READ THIS COFFEE BREAK

At least read part of it.  Do.

Five reasons blog posts are of higher scientific quality than journal articles http://daniellakens.blogspot.com/2017/04/five-reasons-blog-posts-are-of-higher.html … via @lakens


With her opening shot at glittering generalizations and the case she makes against other journal no-noes,,, how could I resist this article?